ADULT: EPILEPSY

Posted on March 07, 2012

Women often face the dual challenge of caring for children and being the breadwinner for the household in places where formal jobs are hard to come by. Partners In Health helps women find dignified work and the social support they need to be healthy and economically productive.

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ELDA'S STORY:A woman learns to live with epilepsy, becomes health worker, in Chiapas.

Elda, left, works with a patient from a neighboring community.

Elda first started suffering from epilepsy when she was 13 years old. Soon, her violent and unpredictable seizures forced her to drop out of school. Handicapped by her condition, she more or less became confined to her home – a marginalizing situation for someone living in one of the small villages scattered across the mountains of Chiapas, Mexico.

Largely isolated by the rugged terrain and often-eroded dirt roads, Elda – like many people in the region – initially turned to “doctors unqualified to handle the disease,” recalled Dr. Hugo Navarro, a physician working with PIH's project in Mexico, Compañeros En Salud. “Sometimes they are just deceived by charlatans who sell them miracle products. Sometimes they are told that they will never be able to heal.”

Elda’s family brought her to many of these local healers throughout the years but nobody was able to help. Despite the fact that epilepsy can be easily treated when people have access to quality health care and basic resources, “living with a non-communicable disease like epilepsy in an environment where people do not know about the physiopathology of the disease can be very impairing’” said Hugo.

Confronting a chronic disease in rural Chiapas

With as much as one-percent of the population suffering from the disease, people in Chiapas living with epilepsy are weighed down by the social stigma. They often lack work and rely on their families to survive. “They are unable to marry because people would not want to be with them,” stated Hugo. “Some people in their villages may even think they are cursed.”

Elda talks to Dona Chus, a neighbor living with epilepsy.

While people suffering from epilepsy certainly are not cursed, the exact causes of the condition are not totally understood. What is known is that epilepsy results from the generation of abnormal or excessive electrical signals inside the brain, which causes recurring seizures. And symptoms vary wildly: some people simply stare blankly for a few seconds, while others have full-fledged convulsions.

While death or permanent brain damage from seizures is rare, those lasting for a long time or two or more seizures that occur close together may cause permanent harm. The greatest risk stems from the suddenness of the episode, causing people to fall onto hard surfaces or into water and cooking fires.

“Outcomes are especially bad in remote areas because appropriate care and treatment is not available for most people,” according to Hugo.

After finding help, Elda becomes a health advocate

“A few years ago Elda finally heard about the health promoter network in the area, and came in for a visit,” said Hugo. “She started taking carbamazepine, which helped her stop having seizures. After that, she started coming to training workshops run by CES and its longtime partner EAPSEC. As soon as the second workshop a few weeks later, Elda was able to walk to the meeting from her village, something she had not done in years.”

Elda, once housebound because of her epilepsy, is a community health worker with PIH/EAPSEC.

In March 2012, the team celebrated Elda’s 29th birthday, and the fact that she has lived seizure-free for four years. That’s not all. “She is a health promoter in her village and helps other people who have this same disease in her community,” said Hugo.

Elda spends her days bringing medicine to people once like her, while also working to educate people in the region about the disease.

According to physicians at the Mayo Clinic, most people living with epilepsy can become seizure-free by using a single anti-epileptic drug, such as carbamazepine. More than half of people on these drugs can discontinue using them after two years without risk of future seizures.

“Many epilepsy patients have told me that they thought about committing suicide,” reflected Hugo. “This is why we have must reach out as many patients with epilepsy as possible and help them make a significant change in their lives and fate.”

Elda, Hugo, and the rest of the Compañeros En Salud and EAPSEC teams are bringing hope and relief to people living with epilepsy in Chiapas one person at a time.